I know it's been a couple of years since the initial post, but if you're still struggling, I wanted to give you my experience. In November of '99, I fell and hit my head running out of school. Very mild concussion, no big deal. The next day, however, I woke up with a very severe headache that would last the next 12 years. I spent those years going from doctor to doctor searching for an answer to my pain. It was the kind of pain you've described; a kind of dehydration of my brain, like my brain was rubbing against the skull causing intolerable amounts of pain. It was made semi-tolerable by laying down or sleeping, but nothing would make it go completely away. Fast forward to January of 2003... I got in a car accident. Again, only mild concussion, but my pain escalated to a place I never imagined it could go. During this time, I was diagnosed with all sorts of things, had MRI's, CT scans, etc., yet nothing was ever definitive enough to tell any "specialist" what was happening to me. Another six years pass, and finally my angel of a fiancé finally finds the doctor I need to see (an Otolaryngologist who specialized in CSF leaks). Sent me in for a specialized CT scan, but it took another year before I went back, because the tech who read the scan didn't see anything worth reporting. When I took the disc in to the doc so he could see if for himself, he spent 30 seconds looking at it and told me there was definitely something there that needed further scrutiny. Went in for exploratory sinus surgery, and it turned out I had TWO leaks in my ethmoid sinuses caused by a bone spur that cracked when I hit my head both times. I was losing a liter of fluid a day. I had my repair done in June of 2010 and I still suffer from daily pain. It's nowhere near the level it used to be, and I feel hopeful that one day I will be able to live a life without pain meds, but I still use them everyday. It is such a difficult place to be in. I want anyone to reads this to know that you're not alone in your struggle.
If you feel as though you may have a CSF leak and you feel fluid dripping from your nose or ears, take a glucose testing strip and swab the fluid. If it turns brown in color, the chances are pretty good you may have a leak. CSF fluid has a lot more glucose than mucous does. This is a very quick and dirty way to test yourself, but it's a way to give proof to doctors who may doubt you. You may even be able to recreate the experiment in front of them so they can see it for themselves. This was the way we were first able to get the doctors' attention in my case.
Whatever the case, PLEASE don't give up hope. I went through 12 years of pure hell before I was able to even get any answers. Even though I still have pain on a daily basis, it's so much better than it was and I have a quality of life that I had previously grieved and given up hope of ever having.
its been april 1 2009 this post been out there,
i have lots to share with girlygirl333
i got my csf leak june11th 2010 and just seeing this post.
i wish i seen this then.
beta2transferrin is lab results and yes its a son of a ?)({}? . head pressure like a vicegrip and feels like water balloon. aka empty nose syndrom especiaallly when turbonates taken out.
i had sinus surgery and regret every day of it. i also had #11 tooth pulled and i experienced passing out when lying down. ended up with right after surgery trigeminal neuralgia, occipital neuralgia, peripheal neurapothy
mine is no lawsuite or am i trying to but when hypocraatic oath is broken of do no harm.
that's when i lose trust in mri's and ct scans xrays but lets avoid the contrast in spine to see where im leaking yet call me back to reschedule procedure and here im stripped of anxiety meds till i comply into pshyco therapy and pshyciatrist.
later i find out i got 3 calls from dr's oh i got csf leak alright! no on want's to work on me.
im a risk. but to be told by phone message left on machine i re recorded n sent to them and risk managment to be told protocol was followed.
its not bout money its bout healing holes i found in physicians report and for aarea i didnt sign up for and thats sphenoidectomy aand to my astonishment amazingly i see 2 afrin soaked pledgets in sphenoid to stop leak. yet im told i dont have one.
why all the ruckus and all in my head theory. welll ilearned in news paper my e$t surgeon engaged now married to v.p. of the usa daughter.
it be big bad news to get out in the open.
so new plan is to givee 5 star ratings across board for him by his staff.
he is a good guy in person. but i was and am still injured and need help. no money, argument and even going as far as messing with my cable nd internet deleting my files. files i transfer on fb or anywhere. it vanishes soon i post images and that video phone message.
cat's out of the bag. my life is ruined so why not go the distance.
i cant run or hide. i cant travel to get help in another state. soon i show up in e.r. triage notify security and b4 you know it im watched and guarded.
my files are red. flagged. pain meds abuse alert. when i was on pain meds well controlled 2008 pilonidal cyst 2x. up to 2011 then it spun out of control. yet im still hanging in there.
i try seeing this surgeon to shake his hand and just throw this ovr our shoulders and figure out a mathmatical solution.
but soon as mom and i got off the elevator here we go again.! security and manager and im not wanted or to be seen so i'm back on the elevator fast i came off it.
that's part of my story. i will always suffer and hurt as if i am fixed the 1st question to be asked is...why now and if it is fixed then this means it exist. logical ? and maxillary jawbone i needed to be fixed. hole in jaw. oroanular fistula communication as it requires a e.n.t. and maxillofaciaal surgeon but maxillo doc never showed. ! my surgery changed and i was lied to. now i suffer. it dont exist.
so who do i go to? anyone trust anyone?
thank you.
Thank you for your reply *smile* When I have symptom flare-ups, guaranteed onset with any strenuous activity, I have a very stiff neck, debilitating HA and head pressure that require me to be in a dark room, no noise, no light, laying flat with neck propped up on a bolster, head tilted back and icepacks all around my head/neck. Often times vomiting. I do understand your experience with a csf leak and this is very similar to what my first neuro told me. However I have since talked to a number of people that have ongoing small, slow and/or intermittent leaks (sometimes for a decade or more before they are properly diagnosed/treated) that have experiences similar to, if not exactly like mine.
I did see an ENT and he said "I do sinus surgery and from what I can see you don't need sinus surgery". He referred me back to neuro.
HI...may I ask u how u feel in general?..With a CSF leak u would most deff be in the dark, lying down and not able to do much. I had one and believe me...u would know if u had one.
U can get a CSF leak from dental work and even surgery on ur sinues....and there are articles on spontanious CSF leaks....
Have u been to an ENT dr?....this may be a place to start since u have the drainage in ur nose and throat area.Maybe it is post nasal drip?
Keep us posted
"selma"
I should also mention that while the leaking from my nose is intermittent their is almost always leaking into my throat. It is salty with a tinge of bitterness, tastes kind of like the flavor of baking soda mixed in water.